End-Of-Life Caregiving With Your Siblings

Being a caregiver is challenging in the best of times, but it’s incredibly emotional – and stressful – when you’re caring for a parent toward the end of their life. While the support of siblings is always helpful, making decisions that honor your parent’s wishes may be easier said than done.

5 Steps To Creating Cooperative Sibling Caregiving For Parents

Emotions are fraught, old wounds or hurt feelings may rise to the surface, exhaustion makes everyone more reactive, and differences of opinion can make it hard to provide consistent care. After more than 40 years of providing hospice support in client homes, communities, and our own hospice house, we understand how challenging it can be to get multiple family members on the same page. However, our experience and incredible team also know that it’s possible.  Feel free to reach out to local hospice agencies to learn more about how to create collaborative and cooperative care plans. We offer free, no-obligation consultations, and we’re always here to help you when you need us. Here are some expert recommendations for creating a collaborative and cooperative care team that honors every sibling’s feelings while keeping your parent or loved one’s wishes at the forefront.

Make Sure Your Parent Has Completed End-Of-Life Plans 

It’s never too early for anyone to create a thoughtful, intentional Advance Medical Directive (we recommend visiting Three Wishes to get started if your parent doesn’t have one in place). You never know what twists and turns life can take. The pandemic taught us that even young people should have a sense of what they want—and don’t want—when it comes to lifesaving measures. However, we recommend taking it further than that and creating plans that accommodate everything from your medical directives to your end-of-life plans. The more your parent can get down on paper (and signed by an objective witness or notary), the easier it is for siblings to return over and over again to “this is what mom/dad wanted…” whenever there are disagreements. Visit our page to learn some of the questions to review when creating end-of-life plans to get you started. Once they’re complete, share them with the family ahead of time so everyone is prepared. Those written plans, created and signed by your parent(s), should always have the ultimate say in how – and what – decisions are made, alleviating disputes within the sibling dynamic.

Work with a palliative care or hospice care team ASAP

There are some differences between palliative care and hospice care. While both prioritize comfort care, which includes mental/emotional health, palliative care is available to those continuing to receive curative treatments. Some insurance providers cover a portion of palliative care, and others do not. Hospice, on the other hand, is 100% free for any qualifying individual. However, while the client can continue taking medications to manage symptoms, they cannot participate in curative treatments. Also, depending on the palliative or hospice care provider, hospice teams may provide more on-site patient and family support through on-site visits from nurses, medical aides, social workers, hospice chaplains/spiritual counselors, grief support, volunteers, etc. In addition to providing invaluable support to palliative care/hospice care clients, we’re here to support the family. Our objective input and boundary holding for our client’s wishes can help diffuse contention within family systems. 

Understand how debilitating arguments can be to quality-of-life

If your parent is facing the end of their life, arguments, and disagreements between siblings can seem catastrophic to them. It disrupts the peace and wastes precious time. The more everyone can put personal feelings/emotions aside to serve the good of the whole – the better. First, share our post about how your emotions can hinder a loved one’s healing or dying process. Then, some simple agreements should be created on handling disagreements about caregiving or what your parent wants. Here are some questions and thoughts to guide that process:

• Is there a current end-of-life (EOL) plan in place? Update it or add to it if your parent is still able to communicate their wishes to minimize areas of confusion (The hospice care team can help with this). 
• Who is/are the primary caregivers?
• Who can make the final medical/EOL decisions (as per the advanced medical directive?)
• What are the roles other siblings will take on?
• How will siblings communicate as a parent’s conditions change?
• What is the plan for settling disagreements?

The more that is agreed upon ahead of time, the easier it is to fall back to those agreements when things get increasingly harder or more challenging along the way.

Implement respite care from the get-go

No one person can go it alone in the caregiver role. Even the most competent caregivers need time off – and not just to run errands or keep up with their own medical/healthcare appointments. Primary healthcare givers need time to refill their energy reserves and to:

• Take a walk, attend an exercise class, etc.
• Catch up on sleep.
• Go to coffee or a meal with friends.
• Attend church/spiritual services.
• Spend time with their immediate family (somewhere outside the caregiving realm). 
• Take a vacation or two per year.
• Have multiple days off in a row.

Caregiver fatigue leads to caregiver burnout, and that’s a recipe for disaster for everyone involved. Respite care is available from family, friends, local licensed caregiving agencies, and hospice volunteers. The more you support the primary caregivers, the better rested they’ll be, minimizing feelings of resentment, reactivity, frustration, etc.

Take advantage of grief support offerings in the community

There are a range of free grief support options in most communities, as well as online. While most people associate grief with the death of a loved one, there is also an under-addressed type of grief called “anticipatory grief.”  Anticipatory grief acknowledges that we are already grieving the upcoming loss of a loved one – and is very prevalent in situations where parents are dying from diseases involving dementia or significant loss of physical ability. It feels like the parent you’ve had is already gone, and that’s a significant blow when combined with physically witnessing their progressive decline. By finding ways to process the grief you have about your parent’s disease, end of life, or the hurts and traumas of the past, you gain tools to better handle disagreements with siblings as they arise.

Hospice of the Golden Isles Supports Sibling Care Teams Anyway We Can

Whether your parents are fresh into a terminal/chronic diagnosis or you’ve been caring for a parent for a while now, Hospice of the Golden Isles is here to provide support. We are here to work with families like yours by bringing our supportive and gentle expertise to the mix.  Our hospice team is here for the entire family, working collaboratively to bring as much quality of life – and peace of mind – as we can. Contact us to schedule a consultation or to learn more about how hospice services can ease end-of-life caregiving with your siblings.